Reflections Thus Far

Holy cow, it's August! Time flies when you are having...well maybe it just flies. April 22nd is when we came to Philadelphia just to have a consultation. Little did we know the crazy events that would follow. We came just to make sure that we could do Fetal Surgery just in case it was needed. On April 26th it was needed.

It's hard to process everything that has happened so far. Kate and I still talk about how this is so surreal. This happens to those people on "A Baby Story" on TLC. It doesn't happen to us..well apparently it does. For some reason God chose us to be in this situation in this moment in time. Here's a few of my observations on the whole process.

#1  God is good. And He is not just good because He answered our prayers. I know that it is obviously easier for me to say "God is good" considering we still have a healthy and happy Haddie in room 94 of CHOP. But I would like to think that I could still say that "God is good" even if He chose to take our daughter. Because it is true. I know that He doesn't want death and destruction and disease. He never wanted that. But man chose to sin and this world got screwed up. Death, pain, and teratomas came into the picture. But He has still brought good things into the world and He chooses to intervene sometimes. Sometimes, for whatever reason, He does not. So we thank Him for doing it this time for us because He didn't have to.

#2 We aren't really that strong or special. People tell us often that they don't know how we do it or how we have kept such a positive attitude. We don't really feel that special. We really didnt have any options in all of this. Haddie had to have the surgery. So we dealt with it. She had to be born premature. So we dealt with it. We had to live away from home for a few months. So we've dealt with it. We may look like we are strong but I assure you that we are not. We both have broken down, gotten depressed, and became angry many times. Some moments we just hung on. We have relied on prayers, cards, and friends during all of this.

The only thing that would make us special is Christ. We are Christians and have hope of eternity. So we knew no matter what, Haddie would be okay. I have no idea how people without hope of heaven can make it through this. We have a peace that I don't think some of the people at CHOP have. And I'd like to take credit for that...but I can't. It's from God and God alone.

#3 God uses little things for His glory. I know that some of you that read this may not be Christians or may not pray a lot. But you have talked to God on behalf of a little girl...and God has received glory. Some doctors and nurses have seen our faith, doubted that little girls chances, and have seen God's glory. And in my own heart I've had my own doubts and worries...yet I've just tried my best to trust Him. And every day I see that precious child, I see His glory. God has used a 2lb 7oz little girl to change some lives for His glory. And that just pumps me up.

So that's just a few of the things I've been thinking about. We ask that you continue to pray...especially tomorrow as Haddie has surgery to remove what's left of the teratoma. We are so ready to go home. Apparently the Lord thinks I need to learn some more patience :)    Hope you all have a great weekend and thanks for joining us on this crazy journey called life.

O, and if you aren't a Christian and don't know about the hope we have, please feel free to ask us about it. We would love to tell you an awesome story about a man named Jesus.

Surgery Date Set

Met with the surgeons yesterday. Haddie has been gaining weight and is up to 5lbs 2 oz. They believe she is big enough for the surgery which will remove what's left of the teratoma. So a week from today, August 2nd, Haddie will have the surgery.

They will have to intubate her again in order to give her the anesthesia. They will go in and remove all of the teratoma and also take the tail bone. Apparently the tailbone is where the tumor could grow back some day and since you don't have to have a tailbone, they are taking it.  They will also do a little reconstructive work to make her little butt look more like a little butt.

Recovery time is anywhere from 1 week to 3 weeks. She will have to come off the breathing tube again which hopefully she will do quickly. Then as long as she doesnt have a ton of bradys...we should be headed home!

We are excited about knowing the date and knowing that we are almost able to come home! We aren't so excited that our little one has to be intubated and go through the surgery process....but it's what she needs.

God has truly blessed us. Please keep Hadassah in your prayers this upcoming week and especially on Friday. We appreciate you all! Have a great weekend!

Weekend Update

Well it's be over a week since I've updated. There really hasn't been too much going on. Haddie has been making progress slowly but surely. She currently weighs 4lbs 14oz and is gaining a little every day. Kate and I have noticed that she is definitely becoming a baby. Yes, I know she's always been a baby but she was a premie baby. She squeaked, enjoyed being in her box, and loved containment. Now she cries (quite frequently), likes being in her vibrating chair, and looks and acts like a normal baby. That is a good thing.

Kate's mom and dad are here this weekend and then on Sunday Nathan and Carley are coming back out for a few days.

Still no definite answer on when exactly we will go home. Haddie still has bradys and she needs to grow out of that. She need to be 5.5lbs before they will do the surgery. I'm pretty sure that her eligibility to go home and her size for the surgery will match up and that she will have the surgery here. So our guess is sometime next month depending on how Haddie does.

Kate's work has been more than generous to us. However, they have asked that Kate be back by September 1st. We have our medical insurance through her company. We are pretty sure about August so hopefully that will all work out. Kate obviously isn't leaving Haddie if she is still here. We could ask for a transfer to Children's Hospital in Columbus if time starts winding down on us. Please keep that in your prayers. We trust that God will help us in our transition back home.

Below is a link of the video of when we walked in one day and saw Haddie in her vibrating chair...she really likes it! Thanks for your continued prayers. We are in good spirits but we are very ready to come on home. God bless!

She Likes It

Movin On Up

Another great day! Hadassah has been making steady progress. She weighs 4lbs 3oz. She has attempted breastfeeding the past 2 days and seems to be warming up to it. They still feed her by her feeding tube primarily. The doctor came in today and talked to us about the steps for us to go home...we are getting closer. She just needs keep gaining weight, maintain her temperature, and have less and less bradys. She may come home with the feeding tube if she hasn't switched over to breastfeeding yet. We might be able to go home and then do the follow up surgery at Ohio State. The doc is checking with surgery to see if they are okay with that. If not we might have to come back to CHOP or they may do it before we leave.

The other great news is that Haddie was moved out of her isolet and into a crib today! They lowered the temperature in her box over the past few weeks and she has adjusted pretty well to it. The video below is her first time going into the crib. She looks so small in it!

We are very excited with all the progress she is making. Keep the prayers a coming. I think we are getting there!

Suck-cess

We have been having a pretty sweet week thus far! Man it's been crazy! Haddie has been doing great breathing all on her own. She is also maintaining her own temperature on her own. They keep lowering the temperature in the box and it's getting close to room temperature. That means that pretty soon she will be ready for a crib!

But today we got a surprise. We called to check on Hadassah this morning and the nurse told us that they were going to try and feed her by bottle! Up to this point she has received all her milk through a feeding tube. When we first found out about Haddie's brain injury the doctors sat us down and explained that she would most likely never be able to breath on her own (which she is doing), maintain her temperature (which she is doing), and suck and swallow (o just wait for it!). So when we got there we swaddled Haddie, Kate held her, and they gave us the bottle.

The video of what happened is below. Before watching we have to say this. The doctors and nurses at CHOP deserve some respect. They do an excellent job and they are very talented. So please understand that I don't fault them for telling us straight up what the results SHOULD be for Hadassah. But we serve a God who is bigger than what should happen. He has blessed us with a miracle that is causing many to praise Him. And we give him all the praise for the amazing things He is doing through our little girl. The doctors tell us what they think the science says. We put our hope in the One who made science. And with that...take a look at another miracle:

Suck-cess

 

Awesome News!

Awesome day thus far! First off, the Belpre youth group is here and we are having a blast! They did a service project for CHOP and they are currently out in Philly exploring. We head to Ocean City tonight! It's very cool and refreshing having them all here.

But that's not all...today we came into CHOP to find that Haddie is off any oxygen support! That's right, she is straight up breathing on her own.

O but wait. There's more! Our nurse told us that she was old enough and had met the requirements to be dressed! Obviously Kate was pumped...and I have to admit it...so was I. She is adorable. Hopefully you can see the pic below...if not I will fix it when I get home tonight.

What a great day The Lord has blessed us with. Thank you for the prayers...keep them coming and please thank the Lord along with us today!

Independence Update

Happy 4th of July! Well actually it's still the 3rd but I figure saying happy 3rd of July isnt the same...anyways...

Hadassah is doing pretty good. She currently weighs 4lbs, she is on low flow oxygen, she's eating 35mls every 3 hours, and is on her last week of antibiotics for her infection. She had an MRI of her lower back yesterday to see what the status of the teratoma is. It has a little bit of growth but nothing too significant. We are waiting to hear from Dr.Flake and the surgeons as to when they will do her surgery. We already know that she has to be 6.5 lbs for it so it will be a little while before that happens.

Haddie has had a few visitors the past week or so including my mom and dad, Kate's mom, and her grandparents. All of them have been allowed to hold Haddie....and they all have enjoyed that! Tomorrow night the Belpre youth group will be here. They will do a service project for CHOP Friday morning and then we will head to the beach. Looking forward to that!!! Then on Saturday the Browns  from Belpre will be stopping in. We really enjoy showing off our little girl!

All in all things are going well. We definitely get home sick and we definitely get frustrated sometimes but that's just the way it goes. Most days are good and Haddie is making progress so we are happy with that. Probably the hardest part is being our daughter's advocate. By that I mean that there is a lot said and done with her on a daily basis among the nurses and doctors. They have several teams that work with her and they are on a rotation. We think the lines of communication sometimes get challenging. One team suggests an idea to us...a few days later we realize it was never tried...we bring it up...and it's a new team who hasn't heard of what we are talking about. They do a great job here, they really do. But we feel its our job, since we are here everyday, to make sure they are all on the same page. Some of them appreciate that...and some of them don't.

That's what's going on. We are thankful for a couple of weeks in the right direction. Thanks for all of the cards and prayers....sorry if we missed thanking anyone. We appreciate you all. Hopefully soon we can post a picture of our Haddie in a crib and without any oxygen support! Then she will have her independence!!! See what I did there?!

Love you all!